on the road with our son Charlie in autismland

My son started taking Risperdal in the spring of 2004, when he was 7 1/2 years old, for self-injurious behaviors (head-banging). Charlie was already taking Zoloft for anxiety. (I went into more detail about the use of medication for autistic children here on Autism Vox; it's a topic that I was initially very hesitant to write about; once I started writing about it, though, more than a few parents told me that their children were also on meds). In June of this year, we weaned Charlie off the Risperdal, started him on Abilify, and added an anti-seizure medication, Trileptal, later this summer. This combination seemed to help Charlie greatly and it was just this Tuesday, after a major anxiety/panic attack on Monday morning, that Charlie's neurologist put him on an anti-anxiety medication, Clorazepate . (It's been helping him, but there's still plenty of nervousness around here.)

We were relieved to take Charlie off Risperdal but had long hesitated to do so, fearful of how Charlie would respond to no longer taking it, and to starting something new. By this spring, Jim and I had started to wonder if the medication could be contributing to Charlie's woes as much as, or more than, it was "helping." While Charlie never became obese over five years on Risperdal, his appetite while on it was definitely greater and he sometimes seemed to be eating more because he had to, than because he really was hungry. We've done our best to keep Charlie active and to get him some aerobic exercise every day, and also to make sure his diet has been healthy, with lots of fruits and vegetables, and reasonably low-fat. For the past year, we had a really hard time finding pants (beside sweat pants) that fit Charlie. Pants that were the right length often seemed to have too small waists and my mom spent a lot of time hemming up increasingly larger sizes of pants.

Weight gain and increased appetite are generally referred to as "side effects" that one must grin and bear. And certainly, these can seem not quite as big concerns as self-injurious and other "challenging" behaviors. On the other hand, having a bigger, heavier child hold plenty of challenges for a parent and certainly for that child. Cahrlei gained quite a bit of weight when he first started taking Risperdal and he lost his interest in swimming for a time: His midsection was much rounder and he was no longer the lithesome, dolphin-like boy turning flips in the pool. The compulsion to eat created by the medication sometimes, we think, led Charlie to eat beyond when he was full, and even to the point of nausea (leading to a number of memories of plates filled with food flying through the air). While Abilify can cause weight again, it apparently causes less than Risperdal, and Charlie, lately, has become a much more picky eater, and also has become lean and lanky (he fits pants that he couldn't pull on in March).

It's all made me wonder: The weight gain that comes with taking anti-psychotic medications should not perhaps be so readily referred to as "side-effect." It's an effect, and one that takes a lot of work to deal with, and that can cause problems of its own.
An study in the latest issue of the Journal of the American Medical Association looked at the effects of taking anti-psychotic medications on children and adolescents. Researchers found that children taking aripiprazole, olanzapine, quetiapine, or risperidone---Abilify, Zyprexa, Seroquel, Risperdal---experienced significant weight gain and also changes in their metabolism.

The participants in the study were from "semi-urban, tertiary care, academic inpatient and outpatient clinics in Queens, New York":

Of 505 youth aged 4 to 19 years with 1 week or less of antipsychotic medication exposure, 338 were enrolled (66.9%). Of these patients, 272 had at least 1 postbaseline assessment (80.5%), and 205 patients who completed the study (60.7%). Patients had mood spectrum (n = 130; 47.8%), schizophrenia spectrum (n = 82; 30.1%), and disruptive or aggressive behavior spectrum (n = 60; 22.1%) disorders. Fifteen patients who refused participation or were nonadherent served as a comparison group.

... 257 young children and adolescents in New York City and on Long Island added 8 to 15 percent to their weight after taking the pills for less than 12 weeks.

The patients, ages 4 to 19, added an average of one to one-and-a-half pounds a week.

........

[The participants'] mean weight at the start of the study period was 118 pounds. But after about 11 weeks, those who took Zyprexa had gained 18.7 pounds; Seroquel, 13.4 pounds; Risperdal, 11.7 pounds; and Abilify, 9.7 pounds.

Their waists typically expanded three inches with Zyprexa, and two inches with the others.

All but Abilify showed rapid and significant increases in one or more metabolic markers, which can presage adult obesity, hypertension and Type 2 diabetes. The metabolic markers included glucose, insulin, triglycerides and cholesterol.

Certainly I'd prefer not to have Charlie taking so many medications. Unfortunately, the current situation calls for Jim and me, as Charlie's parents, to do the things that we think can help him to get through the days. He was agitated and crying when he stepped out the door of the middle school on Thursday. Throughout the day he said "bye bye Pete" and, sometimes, "bye bye Jason"----Jason being the aide currently assigned to Charlie, and Pete being the aide assigned to Charlie at his elementary school. Charlie got very excited when he saw a container of multicolored sprinkles shaped like stars at the supermarket; one of the aides in his elementary school used to buy them just for him (yes, she was too nice) and Pete sometimes kept them in his shorts pocket. Pete and another aide, JP, used to go into the school parking lot and run after Charlie as he rode a bike that had been found at the school.

Thursday, on an early evening bike ride with Jim, Charlie started crying before he got on his bike and cried for most of the ride. But he kept on peddling on and, by the last stretch of the ride, he had stopped crying. Charlie was smiling when he and Jim rode up under a setting sun.

Comments

The weight gain should be worrying. I know the meds are prescribed for a serious reason, but there is also a tendency for the medical field to see health care as less important for people with disabilities, especially for people with intellectual or developmental disabilities. Although I'm referring more to "Death by Indifference" http://www.mencap.org.uk/document.asp?id=284
this attitute starts with much more mundane stuff - dental hygeine is a good example of something that is often neglected, but can have serious consequences.

Sounds like Charlie is really feeling quite sad at the moment, sad about changes in his life and people he misses. It's hard for all of us sometimes to move on with life, and leave behind people or places that we liked (or at least felt comfortable with). I so hope it's going to be a big change for the better.

My eldest started Risperdal for the self-injuring, anxiety (severe claustrophobia) behaviours when he was 6. The Xmas of Gr 3 - (8yrs old) he chewed his shirt sleeves on all his shirts and panicked in the car just sitting at a stop light. The Dr increased it until we saw the Child Psych in Mar who removed it. Turns out it was rebounding - creating that which it was originally suppose to help.

The sugar withdrawl was interesting but otherwise there was no major issues - except school... but that was an entirely different problem I've since dealt with.

He lost considerable weight as well, he was never obese but he was stocky. He'll never be skinny - genetically impossible in these families :) - but he's back to "normal" shape and size.

Little boy went on Risperdal in July. .25/2x's daily. We attempted adderall first but it made the inattention, vocal and physical stim go out of control. He'd simply stand and flick his fingers in front of his eyes... something he'd never done before.

The Risperdal has allowed for a definate change in attention, speech, learning, and allowed him more control over the stim.

As this is what our goals were, we are not going to increase the meds.

I don't know what optimum weight is for him. As a child that grew 4" (7yrs old) last winter he was skinny. He's put on weight but has not increased his food intake, but he's also not growing as fast at the moment. He's stockier, but not fat... before he was very skinny.

The Child Psych says a child should be removed from the drugs on an annual basis for a minimum of 2 weeks to see if they are still working. Preferably 4. We'll do so next summer. Maybe he'll have grown enough, rewired his brain enough, that he won't need them anymore.

The weight gain from some of these meds can be such a serious problem, and is so often minimized. My daughter was on one of them, gained significant weight, and it triggered an eating disorder! Happily, she is over that, but it took a long time and it was very scary. I cannot view "weight gain" as a mere "side effect."

Medications are both a blessing and a curse. They are a blessing because it enables our chidlren to access that part of them that is hidden behind their disability. It is a curse not just because of the possible side effects but because it takes trial and error just to see which ones work properly. We have gone through many cocktail mixes and have finally settled on the ones that really help, but there were times that the boys went through tough times due to their meds. (Some had the opposite effect of their purpose and increased the anxiety instead of decreasing it)Unfortunatley until they can figure out what works with just a blood test this remains the only way to help them.

I am sorry that Charlie is having such a hard time. It is difficult for these children to adjust to change and sometimes the growing up part is so hard. Even my aspie 16 year old is going through this (he admitted it to his therapist yesterday) and he can at least verbalize everything he is feeling. I hope Charlie adjusts sooner rather than later and that he finds new people that care for him just like those from his past. I hope everything that the family is going through right now works out for Charlie's benefit and he ends up at a school that revels in Charlie's uniqueness and gifts.

@Emma, you wrote that there's "a tendency for the medical field to see health care as less important for people with disabilities"---I think that is a really key, and very often unexpressed, notion, as if being being obese, developing diabetes, and all the attendant effects of these on one's daily activities and functioning are "ok" in comparison to other things.

A friend who's a speech therapist (used to be a therapist and aide for Charlie) told me about how she spent a summer working at an autism center. There was a boy there, she told me, who had gotten very, very heavy, large due to medication; no one, she told me, wanted to work with him, except for her. She had worked with him when he was much younger and, while he was always on the heavier side (she told me), she still remembered him as that much younger boy; still saw that younger boy in the much larger person he had become. I hope someone besides Jim and me can remember Charlie as he was when he was younger, and know that he's still very much the same person as when he was a smaller boy.

We started Buddy Boy on Abilify once, and in two days he had classic tardive dyskinesia (lip smacking, mouth movements). The psychiatrist swore it couldn't happen that quickly. Well, it did. Stopped it immediately.

Fortunately, Any increase in appetite caused by Risperdal (which Buddy Boy is occasionally on for short periods) is more than offset by decreased appetite from his ADHD med.

The decision to use medications, or not, is a difficult one faced by parents of children with autism disorders. I take very few medications personally and was not inclined to give them to our son. Our pediatrician recommended AGAINST meds for our son Conor, who has Autistic Disorders, with profound developmental delays, for as long as we could.

Conor is now 13, six feet tall, lean and lanky, and we still do not give him meds. We do use ABA principles at home and he receives ABA instruction at school. Structure and predictability, to the fullest extent possible, have been important in reducing anxiety. He has prospered at middle school and we are now preparing him for transition to high school environment.

We hope to continue to forgo medication for Conor although we recognize that once we are infirm or deceased that his caregivers may not feel the same way. In the meantime he has had 13 medication free, happy, years.

Each child is different is more than a cliche, especially with respect to decisions concerning medication of autistic children. I am not suggesting that any one else should follow our example. I am only providing it as an option for their consideration with their professional advisors.

Wow - that link on autism vox (blisstree) about Risperdal - that site has changed - it has a heading for sex positions & two articles listed at the header tell you in more detail - strange to see when reading on autism.

Some of those changes were in the work when I left b5media and writing Autism Vox!

Geodon was not mentioned for Charlie. Charlie has been on Abilify for a year now and it seems to be helping, a lot. It comes in a tablet which is very small (Charlie swallows pills) (without water usually). Apparently Abilify can cause weight gain like Risperdal but that hasn't happened so far for Charlie. He really looks different from what he did in photos from a year ago.